CIDP & Marriage/Relationships
AnonymousDecember 2, 2009 at 1:45 pm
This isn’t really a “medical” question, but I’d be interested in hearing how this disease/syndrome/condition has effected your marriage or other personal relationships. Don’t really want to go into a lot of detail, but obviously, since I’ve acquired a neuropathy, I can’t do a lot of the things that we used to do before. Hiking, snow-shoeing, outdoor activities have always been very important to us.
I’d be interested in both positive and negative stories, and how you handled these situations.
AnonymousDecember 2, 2009 at 5:21 pm
Well I tried, with my exhusband, prior to my diagnosis to exlpain what i could and could not do anymore. But than i have to say my marriage was on shaky ground. He was very understanding for a short time and then it seemed, I guess, that I could not provide that which he needed. At the time I will also add I was bedridden mostly with spotie paralysis from the cheeks down. Needless to say he left me.
Now that i am out of bed and on my own it just seems to me that if you truly have a good marriage that perhaps finding things you can do together, date night, movie ect… is a good place to start. I also feel that some modern day couples live lives very differently with allowing their partner to continue their able lifestyle as they find they need to; perhaps with groups that do these sort of outings. This is such a deeply personal issue with our family members about what we can do today as opposed to what our lives were pre- CIDP. I was the person who always cooked all the family dinners at holidays. Now I can only make the pies which put me in bed for 2 days, but is worth it.
This is not ment to upset you, I find in these years that the marriage vows i took, through sickness and health, simply was not in my husbands character. But talking to your wife about this issue seems like a must so as to begin a new path for the both of you. I will keep your family in my prayers.
AnonymousDecember 2, 2009 at 7:51 pm
through sickness and in health is exactly what my husband said to me when I told him last summer that I think I am really sick and then i looked at him in the face and said “no you need to understand, something is really wrong.” Not being diagnosed has been very hard on our relationship. I was there as a codependant, clean all through his alcoholism. He almost has one year and is so spiritually fit and all but I have asked him to be there for me now. I cant help but feel like he wants to roll his eyes when i complain so I spare him most of the time. that is why I am always on this site complaining.lol. It saddens me to think that he doesnt trust my judgment enough to think that I would go running to any doctor for any old reason. maybe its just my imagination.
AnonymousDecember 2, 2009 at 8:54 pm
I’m only 23.. so obv. still in the dating group.
My boyf. lives in the next state over. I only see him when he comes over to visit.
He doesn’t understand just about everything in my life.. but what should I expect from a 23 year old male?..
He doesn’t understand my eating habits, he doesn’t understand my mental status, and he doesn’t understand my physical issues.
I live in a building for the disabled.. he didn’t get it. He was confused as to why there were so many “special” people in my building.
I look normal. I go to college.
And he’s from another country.
There are some things, he just may never get.. and I don’t know if I necessarily mind. 😎
AnonymousDecember 2, 2009 at 9:20 pm
Why? Because due to my last relapse and fall, hospitlization, extensive surgery on a BIG leg fracture and a stint in rehab? Well, I know now that my own spouse is a true love! Always calm competent and a ‘decision’ maker on the surface? My feedback from his notifying my siblings gave a different picture.
Needless to say, at first, when I got ‘this’ I was frustrated that no one got ‘it’! Then my spouse got PN due to type-2 diabetes. And I could only say ‘I KNOW’… and give him resources I’d found on the net….to help HIM understand what’s going on w/HIM. Taking it the next step further was harder? But, we got there eventually.
Now is the time to START talking about Those things! The stressors of being married, or not; being cared for when needed, or not; and the needs to [B][I]communicate[/I][/B] effectively during first the critical times, and then-for the longer times the ‘maintenance’ times! Not to mention that at times? You can’t do half of the ‘normal’ life things most folks take for granted!
My docs periodically asks me are you stressed by this? And, my only reply is: What still sane person would NOT be stressed by ALL of this!?
IF you need individual or couple counseling is up to you.. But DO look at web sites – some are good? Some not so… to get a blueprint about stressors for you and for your spouse and then once you know how THEY are feeling at times [resentful, pity, duty, tired, plain sad?] you can use all this knowledge about how others have dealt with these awful situations more gracefully for yours! I’m not saying it’s easy, it’s not at all! BUT, if you work on communciations about how each of you are ‘feeling’ about this and that? You mite learn that the little ‘Honey Do’s?’ Are and will continue to be our own worst sins. So get it out in the air and let the AIR clean out your frustrations! You don’t always need a counselor? Tho if it’s available, it mite help a bit. It really depends on how astute the counselor is…and that’s a whole other kettle of fish!
Never EVER forget the ‘please’ and ‘thankyou’s’ Also The Gee I really appreciated you helping me with ‘X’! The P’s and T’s go w/any relationship? Also the Love yous! Now I’ve been thru the CIDP, BC, Hashimotos’ and a few other things hatching now – And, I have to say that this last, the injury w/hospital and rehab and ‘home care’? Has been the toughest! We are still together? We both try to communicate as best we can and we work towards a ‘better me’ to live with! I hope you too can work to re-define yourself and your family and life. This stuff does seem to require ‘redefinition’! It’s not as scary as it may seem – it’s merely a matter of attitude! Go for it!
AnonymousDecember 3, 2009 at 10:34 am
Although I’m not married nor do I live with my guy, I wanted to add my couple cents. Prior to meeting him, I’d had relationships where guys didn’t understand the extent of my abilities (or lack thereof). Other than having one heck of a limp and using a cane when outdoors, I look “normal”. :rolleyes: None of them ever took the time or actually, cared enough to find out more about GBS. This was sad as I supported and probably became an enabler for their issues.
It was very discouraging and for a while, I stopped dating. It was simply too stressful to try and explain every little thing or receive “the look” if you can’t do something.
When I met the guy I’m now with, one of the first things I mentioned was GBS and its residuals. I didn’t have to explain much as lo and behold, his former father-in-law also had GBS. At times, he’s in awe at how much I’ve accomplished and he has, quite simply, been my greatest supporter.
For better, for worse, for sickness and in health can truly work if the other has plenty of patience and understanding.
AnonymousDecember 3, 2009 at 2:03 pm
I am relatively new to being Diagosed with CIDP. Like someone else mentioned, the more stressful time for us was the period leading up to a diagnosis. My wife isn’t real athletic so, if I can keep up at the store, I’m good. I am 45 and she is 51.
She has been fantastic with everything, picking up when I couldn’t and doing more when necessary, without complaint. I am Lucky.
Wifey even went to the symposium and that really helped her understand.
As far a people, spouses, siblings and friends understanding, it takes alot of explanation til those not directly affected, sometimes begin to understand. thats a huge topic.
Alot of angles on this topic. dating, age, time, distance, divorce, marriage, emotion, financial, on and on, etc. etc. etc.
I believe having CIDP has strengthened my relationships with many and shaped who I am today.–tim–
AnonymousDecember 3, 2009 at 3:05 pm
Thank you all for your replies.
As Tim said, there are many different angles to approach this question from. My wife and I have been married for 27 years (we’re both 50-ish); we’ve been through a lot of the different programs…Marriage Encounter, Walk to Emmaus, Gary Smalley, etc. We’ve both always been willing to grow and adapt as the relationship needed. That said, even the most flexible tree can still break in a strong enough storm. So, I guess I’m trying to be proactive about this, learning what has worked, what hasn’t, how others have adapted, etc. My wife has maintained her mountain biking and hiking routines, as well as going to the gym, but rather than it being “couple time” like it used to be, it’s her exercising with friends, and me at home or somewhere else. What things have you found to compensate for the changes in lifestyles? What “new” hobbies, etc., have you discovered and been successful with to make up for those old hobbies that just aren’t an option anymore? Does that make sense?
A lot has been said about our “spouses/partners”. What about you? I mean, and maybe this is more a “man” thing (but I really don’t think so), how have you overcome the issues of guilt or inadequacy? I’ve never been one to be comfortable letting others take care of me…I’ve always been the care-giver. I do all the cooking in our home, have always been a pretty handy guy, etc., and now that I can’t do those things I struggle with my own thoughts and condemnations. As someone once said, “I “SHOULD” on myself all the time”. 😀 When I’m hurting and trying to rest I still have this battle going on in my mind, thinking that I “SHOULD” be doing this or that, or I “SHOULD” be able to still go to work…”Is it really that bad?”….”would someone else be able to go to work”…”am I giving in/up too easily”….”I should “Cowboy Up” and get to work”. That kind of stuff.
While we’re not on a road to divorce right now, I’m trying to be as proactive as possible, making sure that we still spend a lot of time doing enjoyable things together, and not just drifting apart.
Hope that makes sense. Thank you again for all your input. I appreciate your time and your experiences.
AnonymousDecember 3, 2009 at 4:45 pm
Sounds like you have a good approach and outlook on things. Staying positive and participating as much as possible helps.
Since I am not as strong and enduring as I was, I have taken up photography as a hobby. I drive somewhere to a favorite nature site and either sit or walk my way into the woods and take pictures. Birds, Animals, landscape, Football events, cheerleading etc. If its far or up hill I use a walking stick. You’d be suprised what walks, crawls or lands fairly close if you sit still.
It gives me something to look forward to and keep my mind busy. Alot of time spent on the computer editing and organizing the photo’s taken. I really like it.
It has now developed into a home studio for portraits and such. Also joined some photo forums like this but for photography. See Ya, tim
AnonymousDecember 3, 2009 at 9:40 pm
My relationship with my wife has grown and evolved through the last several years. My job was higher stress and she stayed home with the kids. After the last kid got to 3rd grade she had a heart attack. She was 38. I thought I was a good husband through her surgery and recovery. Then I got diagnosed and the CIDP got progressively worse. Then I changed jobs, then 9-11, then my brother died, then I lost my new job, then I had a back surgery followed by a neck surgery followed by a small business failure and the loss of our savings. Then it was worse CIDP, leading to SS disability.
Now we are financially broke.
At first, my wife didn’t understand the CIDP and didn’t want to talk about it. Then she chose to ignore it. I think that the surgeries gave her the opportunity to talk with my neuro and she started understanding the CIDP. She started to see how it affected me and started to “let me off the hook” about doing things when i was tired. Now she orders me to bed if I have been up too much. She has seen me suffer and does not want to have to live with me in pain.
Emotionally, there was a lot of suffering. A long term chronic disease is so hard on those affected. In the beginning she said a lot of hurtful things. Things like “I didn’t plan for my life to turn out like this.” or “I never wanted to have to do this.” or about sex,” I don’t want it and you can’t do it.” Those things really hurt me.
As time has worn on, she has learned more, we have suffered together, and our love has grown. While it is still not as “physical” as I might like, our relationship is quite emotionally fulfilling. I have learned more about how she shows love and what things are important to her. I am able to do better for her because I took the time to learn. She appreciates that, and shares more with me and I feel really loved.
My kids are amazing. They have accepted a life with less “stuff”. I am so blessed.
I hope things work out good for you.
AnonymousDecember 3, 2009 at 10:51 pm
I’m a 47 year old man, married 22 years with boys 17 and 12. Prior to CIDP I was extremely athletic – I was an expert, I mean absolute expert snow skier since I was young. Plus, I surfed, ran, weightlifted, etc.
Professionally, I was a well-paid management consultant in a large firm, then I consulted successfully as an independent for 5 years. Thankfully, I purchased and paid expensive monthly premiums on a personal disability insurance policy many years ago, upon the wise advice of a financial adviser.
Now, I am on full SSDI disability – and collect on that private disability policy as well. I definitely dealt with the shame associated with disability. It took work to get past it, although it still crops up on occasion. My wife is not as athletic as I was once was, so my situation is different from your’s in that regard.
Here are hobbies I have developed since I cannot do the things I used to:
Cooking, especially gourmet meals that dazzle my family! My wife can’t stand to see me fumble with cooking tools, I tell her “don’t watch now, just eat later and enjoy!”
Gardening – I hired a gardener who spends time each week to do manual labor, I just get to do the fun stuff.
Being the best house dad possible, making sure kid’s homework gets done, blah, blah.
Helping my wife be an absolute “star” at her job – by helping her with strategy, documents, etc. Kind of like her personal management consultant.
I did find one outdoor activity that I can do, kayaking in a quiet bay. If I get help in and out of the kayak, I have enough arm/deltoid strength to get around and really enjoy the water.
My wife understands the disease, as I am severely disabled with motor weakness, I drive with hand controls, wear prism glasses for double vision, etc. There’s nothing subtle or hidden about CIDP for us. THANKFULLY, extreme pain is not one of my issues. Fatigue is often just moderate, as well.
I think you are on the right track Elmo.
AnonymousDecember 3, 2009 at 11:39 pm
I run around whining you wouldnt know that I was born and bred amoung “stuff” happens that has been over come and families who stuck together dispite.
My mother was diagnosed with retinitis pigmentosa at 30 and has been blind most of my life. she could not return as a school teacher. she had tumors in her olvaries and had a hysterectomy at 45 and due to hormone replacment therapy, had breast cancer at 50. she found her niche and works teaching screen reader programs to other blind people and travels the state of california by herself to do so. she is one of the most possitive people I know. I think she learned to handle “stuff” happening because at 11 he father became a quadroplegic from a car accident and was still a possitive influence for the last 12 years of his life.
My father was diagnosed with paranoid scizophrenia at 29. He has showed up for life everyday dispite this. he worked until retirment. He went to cal poly and majored in business engineering and when his job became obsolete he retired as a security guard to keep a roof over our heads. my sister, his sister and his aunt also have paranoid scizophrenia and his uncle on that side had MS. I guess neurological defects run in my family.
I remember as a child being angry at both of them for their illnesses. I dont know why. I have always taken it for granted that “stuff” happens I think once I find out what “stuff” is happening to me i’ll handle whatever it is just fine.
AnonymousDecember 4, 2009 at 10:24 am
I know that I am truly blessed. My husband has been wonderful since the day I met him.
I dont know how much he “understands” what I really feel like. I know he sees me struggle, hears me make my noises, etc. He doesnt always know what to say when I am frustrated and angry or sad or mad. But, that is ok. Sure I wish he had all the answers…but he doesnt and sometimes just listening when I DO talk…is best.
I do know he tries his best to understand what I need. He tells me not to worry about cleaning up the kitchen or doing this or that. And he will do anything I need him to do, any time.
He gets angry that nothing is working for me…frustrated right along with me.
He wants what is best, he wants me around forever.
He has been doing the heavy grocery shopping for some time now. He just kind of started and I’ve let him continue. I still do my share of shopping but not the big shopping I used to do. It got to the point that going to Walmart would take me two to three hours…that’s too much.
I still do most of the housework…the hardest part is vacuuming…our house is nearly 3,000 sq feet. It’s alot of house to vacuum. But, I do it…including the stairs. I have my stepdaughter help on her weekends b/c she is highly overpaid with allowance. 🙂
I am a clean freak. I know my hubby would vacuum if I asked…and he does vacuum but I’m the kind that wants it done and I want it done now…the way I like it. I dust different than he does..I like my carpet to be groomed with no foot prints. See, I’m a nut.
I have this husband that would do anything for me…but I still have a very hard time saying to him that I need help or that I need rest. I guess I feel like I’m failing as a wife. I’m not the “better half”. I still feel like when I have to ask for help or rest that I’m showing my weakness…I’m letting CIDP affect yet another part…but, I’m coming to terms with this one day at a time.
ACCEPTANCE is awful, isnt it ?
I dont know what I’d ever do without my husband. He gave me the greatest gift I’ve ever had, my Connor..and I cant imagine a life without either of them.
Because of my illness and all we went thru with my Mom having cancer amd then passing away…Connor knows way more than a little 7 yr old boy should. But, on the brighter side of that, he is the most compassionate young man you will ever meet.
My two men are what keep me going when I think I cant go anymore.
Like I said, I know that I am truly blessed and I could only wish we could all be so lucky.
December 8, 2009 at 7:59 am
Stress impacts relationship no matter the source. For CIDPers health is an ever present source of stress. It’s rough enough to be going through CIDP. I can’t imagine going through CIDP without the support, encouragement and love of my wife.
I remember a friend diagnosed with cancer telling me that she didn’t want cancer to take over her life (define who she was). Even though the cancer is gone, it impacted her life significantly.
CIDP has impacted my life.
My wife (high school sweetheart married 35 years next August 😉 ) is wonderful. We’ve walked through a lot together over the and grown together raising two sons along the way. “for better and for worse … in sickness and in health” is a life long covenant for us.
Has CIDP impacted our relationship? Yes. But it’s made us and our relationship stronger.
I encourage professional counseling (a trained trusted pastor). Because the Bible tells us “God is our shelter”. I pray He will shelter you and your relationship as you battle CIDP.
AnonymousDecember 8, 2009 at 1:31 pm
I’ve been married to my husband, Chris, for five years now. We dated back in high school, but lost touch and got back together many years later. In high school, there wasn’t anything wrong with me…I could do everything anyone else could do. But when Chris and I met up and started dating again, I had started to get sick. I wasn’t diagnosed with anything yet, but everyone knew that there was something wrong with me. About seven or eight months into our relationship, I was diagnosed with Common Variable Immune Deficiency. My immunologist had actually told me that I was dying, and if I hadn’t been diagnosed at that time, I had about two months to live. But I started the IVIG treatments right away, and slowly got a little better. Even though Chris and I hadn’t been dating that long, he stood by me…he was always there. Through all of the doctor’s appointments and diagnosis’s (peripheral neuropathy, APS, CIDP, CMT, multiple surgeries), he was there. But one thing was always missing…communication. He NEVER acted like any of this bothered him, and he would NEVER talk to me about it even though I would always try to talk to him. It made me feel alone. Even though he had always been very affectionate towards me, and always told me he loved me, there was something missing. I tried over and over again to talk to him about it, and he told me that he felt that if he talked to me about his problems or what he was worried about, that he would be whining to me and he would be less of a man. And also that I had enough to worry about, and I didn’t need him telling me his problems. Other than that, we seemed happy. There are a lot of things that I cannot physically do, and he accepts that. Whenever we’re out together, he always stops to help me onto and off of the curbs, he always gives me a boost into the car if I can’t pull myself up, and he holds my hand when I’m on my scooter. It doesn’t embarrass him. But just recently, I found out that he had been unfaithful to me. It broke my heart. It still hurts. He said that it happened one night when he was working and ran into a girl that he used to work with, and he’s hated himself ever since. I felt like he wanted a girl that could do all of the things that I can’t. I have trouble a lot of weeks even doing the house work. But he’s told me now that he gets everything that I have been trying to tell him about communication. He said that he took me for granted and didn’t realize what he had with me. He’s let me know that he does worry about me, which surprised the heck out of me. He actually cried! I have never seen him even tear up…but he cried for days…more than I did. So I know that he’s sorry, but you can’t take back sleeping with someone else. I’m still kinda in limbo with the whole situation. Just don’t let this happen to you.:(
All I can tell you is if you really and truly love someone and they really and truly love you, it will work out no matter what. You need communication, you both need to listen and hear what the other person is saying, always make an effort to make sure that your better half knows exactly how you feel about them, never take your better half for granted…always live today as it were your last. As far as things to do together, you can go for a long drive, a picnic, go to a movie, rent movies and make dinner at home (make it special), you just have to be a little more creative.
AnonymousDecember 9, 2009 at 11:30 am
I appreciate this thread because I’m sure there are many of us dealing with these issues without the aid of a therapist or even friends and family that understand!
I had GBS in 04, recovered and now have been dealing with a relapse that’s worse and not going away since July 09. The guilt I feel about being sick is almost unbareable!!
I’m 45 and have been a full time entertainer for most of my life. I sing with a band and I’m a magician’s assistant, (my husband is the magician.) My work with the band and with my husband is very physical and I CONSTANTLY worry about not being able to keep up….and then what!:eek: Right now I’m the main bread winner……and I have to rest all week just to get through the weekend gigs! Now we’re going into busy season and there won’t be many days off between the band and magic shows….oh no!! There’s also a lot of behind the scenes work when your self employed and I’ve been letting a lot of that slide.
My husband and I have been together for 19 years and are very much in love and he has been very supportive through this whole thing. However, I worry about how long that will last. We have always been a team in work and life, (we’re together 24/7) I used to be physically active, (worked out everyday, kayaking, etc….) and I don’t know what will happen if I can’t keep up. I feel sooo guilty because I’ve always been able to handle everything, do it all and keep on smiling but it’s getting harder. I know I should stop stressing and think about my health but how do you do that when people are relying on you??
I even gave my husband the option to leave me if this turns out to be something that isn’t going away but he said he’d never do that. That makes me feel great but I also realize that we are still business partners as well….and he needs an energetic assistant! He could get another girl but he’ll have to pay her and work is rough right now….and will I loose him to another girl? I know he loves me but our life has always been about being partners in work and play!
Also, what will happen if I can’t keep up with the band? That’s our bread & butter money and even though I’m one of the full time girls….I could still be replaced and I live in Florida where there are NO JOBS!! Unfortunately, neither of us is really qualified for anything else that would pay the bills.:o
I really miss who I used to be and sometimes the depression, stress and guilt get’s to be too much and I feel like if this is my future, I may as well give up!! (Don’t worry….I don’t see myself “checking out” quite yet!);) I’m still new to this and in diagnostic limbo so it’s the frustration talking!!
Anyway, I appreciate this thread! I don’t really have anyone to talk to about all this and it does help to get it out….even if it’s just on this forum.
Thanks Elmo….great thread….and I TRUELY hope and pray things work out for you!!:)
AnonymousDecember 10, 2009 at 8:07 am
My wife and family have all been wonderful during this journey into the unknown. During the time I was in hospital and in rehab. going thru all the physical and mental adjustments we have to make she was there every day encouraging, cajoling and sometimes even demanding in a good way that I find the best possible way to cope, adapt and find ways to maximise my ability’s. Now a little over 2 years into this she is still very understanding when I have to tell her I just don’t have it today to do whatever…sometmes she gets just as frustrated as I do but we have learned to take it in stride and as a result we have grown closer in some ways. With the possible exception of our daughter the rest of the family have all been wonderful as well. Our daughter is a little distant about all this but I think in some ways that’s to be expected, she is in her mid 20s and too busy with her life to pay attention and in some ways I think it scares the dickens outta her because she remembers the ole bullit proof way I used to be and doesn’t want to believe that that is done now….. I think she is coming to terms with the new reality in her own way but it will take some more time and that’s ok….she has to accept it on her terms otherwise I think it will just make it worse.
AnonymousDecember 17, 2009 at 5:11 pm
Well, that last post seemed to be quite a “thread-killer”, so I’ve deleted it. I apologize if my reading suggestions were offensive or seemed out-of-line. Guess there is always the possibility that everyone that wanted to post did, but just in case…
Again, thanks for your feedback, suggestions, and support!:)
AnonymousDecember 17, 2009 at 11:07 pm
I have been dealing with CIDP for 15 years (since I was 22) and now I have been married for 4 years and a father of a 3 year old. Six months after che was born I reluctantly went on SSDI perwmantly and was accepted right away…not really that much to celebrate. Since then our income has dropped to almost half and medical bills and prescriptions have really made our live unbearable financially. I feel that thyis is all my fault and if I could just do more we would be in better financial standing. I love my wife and daughter but as we all know some days are just too much to keep a smile on our face and keep an optimistic outlook. I toyed with writing a memior but my motivation is sub-par most of the time. Extreme pain and the problems with opiate side effects got so bad that I voluntarily weaned off all pain meds and after 4 months my mood do to my pain and inability to do what I should be doning around the house become such a burden. I have seen an increase in resentment when I’m tired and unable to lend a hand but conversly when I feel better I do way too much and pay for it by being worthless the nhext few days. Our marraige has just started and I am afraid that in ten years what will she think then??? I don;t want her life to be miserable because of me and honestly all of our problems revolve around my disease. I am in a self esteem quandry and even thought SSDI has a work ticket program I don’t know if I can handle more responsibility when I’m having such a tough time now. I pray that everyone here get the support and love they deserve, we desperately need it. PM for more specifics because this is truly the tip over the iceberg. I’ve never felt such an identity crisis to this degree before and yearn for even small doses of happiness-but they are few and far between these days. I can barely afford copays now and I a relapsing and losing more motor function faster each week. I know treatments are available but how can I afford them and sill pay our houshold bills??? Are there any counselling sites that specialize in medical/financial problems due to chronic diseases. My wife want the old me back and I know that will never happen, as I progress and lose more muscle and nerve conductivity I continually change.
I’ve already lost two younger brothers and my parents divorced after 32 yrs of marriage so my support system is also in crisis. ny pointers or suggestions?
AnonymousDecember 18, 2009 at 12:06 pm
Your post raises a lot of questions. But, first, I want to say, “Don’t give up hope!”. You’ve correctly identified in another post that a lot of what you’re feeling right now is holiday related…which is understandable. Everyone else is running around, all cheery, and you just don’t feel too cheery. Having dealt with chronic health issues for some time myself, I can relate.
You asked about support sites. I see that you’re from Greensboro; here is a website that offers several different options for counseling and support services, based on every different aspect you can think of…grief, chronic illness, disability, etc. The website is:
Have you talked all this over with your wife? It seems you’re doing a lot of assuming. What are her thoughts? Based on your post, she married you knowing that you had CIDP…she had to know that there was a strong chance that things would get worse? You really need to open up and talk to her and give her a chance to speak for herself; not try to guess or opine what she’s thinking/feeling.
Please go to the website TODAY and find someone to talk to. From what you’ve said, you’ve got a lot of things to work through. Most importantly, you need to talk to others…your wife, a counselor, others with CIDP, etc. Your post resonates with me because I have had times when I create my own demons; I start worrying about things, dwell on them, and they mushroom into these huge fears that usually have little basis in reality. But, because I’m not feeling well, and am typically alone when I’m feeling this way, I don’t have anyone to help me keep things in perspective.
Communication is vital in all aspects of our lives. While it’s good that you’re asking questions here, we don’t matter one whit compared to what the “real people” in your life are saying. TALK to your wife. TALK to a counselor. I’d bet that Greensboro has clergy standing about every ten feet; all of whom would probably be more than willing to help you deal with things. YOU just have to be willing to seek them out and then honestly open up to them.
Check out the website…it looks good.
Good luck, and keep us posted.
AnonymousDecember 20, 2009 at 7:20 am
This is an interesting post.
I am sorry for the ones where the CIDP has declined their marriage or relationship.
For me, as time goes on, my lifemate and I, who have been together for 27 years, have been getting closer and closer.
He is my “star”, and love him dearly.
Since I have advanced-CIDP, which fully hit my autonomic system, I must take a handful of pills three times daily, which also includes some pain pills.
And at 4pm, I must take my Marinol pill, (the pill form of Marijuana), in order to be able to eat a small meal once a day.
But, between the pain pills and Marinol, I no longer have a good memory, and he makes sure I take my pills all the time.
He also makes sure I get my oxygen, and takes care of the machines.
He also takes care of my treatments for body sores, (like bedsores but from sitting). And helps me shower and gets dressed.
Though I ran my business for years, it is all turned over to him. I help him in the mornings, as I am the one with the techinical knowledge for our business, and am slowly teaching him that side of the business, (we set up tours for bands and musicians, mostly jazz and some classical, and some pop/world music/and rock).
I know some of you don’t like gay people, but as far as sex goes, it is out of the picture for me, since I have no feeling in the groin area, plus I have a catheter. But, you have to try to please your mate–so I try to please him as best that I can. He still likes to “play”, and I can participate with that…
He knows I am dieing, and he is trying to take care of me the best he can.
We have become as close as ever. We still go out to dinner every now and then–we have in our county, as service called, “Lift”. that picks you up, door to door, in my electric wheelchair, and we can go anywhere we want in California…though we stay down here in San Diego County…all for ONLY $4.00 each way, to anywhere. And he rides for free as my Caregiver, (PCA they call it). GREAT DEAL–lot’s of help!
We are with each other 24 hours a day, 7 days a week. He goes out to shopping and about, so we do get breaks from each other, and I have many doctors appointments.
But if you had the right person from the start, and true love was there from the beginning, then “for better or for worse”, your partner/spouse should stick by you. Perhaps some really didn’t have that “right person”.
But I sure did. I will love him ’til death comes to me.
AnonymousDecember 20, 2009 at 2:50 pm
Thanks for posting that…it sounds like you’re very lucky to have someone so caring and understanding as your partner and caregiver.
Something was said in an earlier post that I want to respond to, as well. I think it was Mac that said his wife “wants things to be the way they were”, or something similar.
My experiences have taught me that there is “no going back” in life, and it is one of the biggest struggles in marriage/relationships. I’ve seen a lot of couples where one is happy with everything the way it is, and when that is upset, for whatever reason, they constantly sit around wishing for the past to re-appear. Ain’t gonna happen.
Whether it’s infidelity, illness, or something as simple as one member developing new interests, life goes on.
That’s NOT to say that the relationship can’t be as good, or even better, than it once was, if both members are committed to the relationship and are focused on the “we” instead of “me”.
It is one of the biggest challenges facing couples, whether they are gay, straight, married, or unmarried. It also effects other relationships in our lives, too. It is also the reason I’ve adopted the life motto: “Change is constant; Evolve or die.”
AnonymousJanuary 3, 2010 at 2:53 am
[QUOTE=Elmo]Well, that last post seemed to be quite a “thread-killer”, so I’ve deleted it. I apologize if my reading suggestions were offensive or seemed out-of-line. Guess there is always the possibility that everyone that wanted to post did, but just in case…
Again, thanks for your feedback, suggestions, and support!:)[/QUOTE]
I want to post something! Guess it wasn’t such a tread killer, huh Elmo?! This is one of the threads I really need to dive into because I am dealing with issues now in my marriage and family. I read Lori’s post about feeling guilty and completely understand! I always feel guilty to the point of tears because I can’t get out of bed some days and my little girls miss thier mommy. Then the guilt of my husband living the life of a single father….. What an emotional mess! Then I get upset because I feel like I have to apologize constantly for actions or lack of actions due to a disease I don’t even want!!! How crazy is that? Apologizing and feeling guilty for a disease I never asked for!!!! I want to shout “take this disease and give me my life back”!!!!!!
Instead, I am going to learn to give myself a break and try to stop feeling so guilty (and adding to my stress level) because this is something that I cannot control. If it were up to me, I would be the one running around with my kids! It really isn’t my fault if my body won’t let me…… I will try to push myself a little harder when the energy is there, but when it isn’t, it isn’t. I really have to give myself a break! So do you Lori!!! We all do……..:D
AnonymousJanuary 5, 2010 at 11:49 pm
When I first got sick, my boyfriend at the time barely visited me in the hospital. My symptoms have come and gone since then, but I’ve found that most men I’ve been involved with can’t really deal with my illness.
The second time I relapsed was on Valentine’s day. I was getting plasmapheresis and something happened and my blood wouldn’t clot and I had to be admitted to the hospital. I barely had anything with me–no book, no cash. I called my then-boyfriend and begged him to call my mom and then come down ASAP with some cash so I could get phone and TV service. He showed up six hours later! He said he was ‘relaxing.’ What a dope! Meanwhile, my poor mom had no idea what was going on–I couldn’t call her because I couldn’t get the hospital phone hooked up, and all my stupid bf said was that I was in the hospital.
My most recent boyfriend (of 8 years) broke up with me recently. He said he didn’t find me sexy any more. I gained 20 lbs after my last relapse and I haven’t been able to lose it. I didn’t know our relationship was built on such a shallow foundation, but there ya go.
It’s a lot of fun being fat, single, in chronic pain and 47. And recently laid off.
AnonymousJanuary 8, 2010 at 9:59 am
Thank you so much for this thread. I thought I was alone in this yet so very
many times in the past with very difficult situations I thought I was alone too.
My husband has never been one to be there emotionally and after 43 years of
marriage I have come to terms with that. I had to learn about myself and
reach for help that he has been unable to give me. He is a wonderful man
always willing to help and has always treated me well and I love him dearly.
After years of trying to tell him what I needed from him emotionally, after
therapy, after crying spells and feeling sorry for myself I have finally come
to the conclusion he really doesn’t know how. He does tell me he loves me,
however he does not want to talk about my disease or learn much about it.
I went through this many times before especially when I went into recovery
for my alcoholism (23 years sober now). He still to this day does not fully
understand that disease either!! All I can say is God put people in my life
when I needed them the most. My friends are a true blessing. My therapist
is an angel and my program has saved my life. And know I am blessed because I have met all of you. I know that I don’t have to go through anything in this world that is dished out to me alone and that is so very
comforting. So if your banging your heads against the wall wondering why
the other significant person in your life is not supporting you the way you feel you should be supported, support yourself through other sources-there’s plenty
of them out there, support groups, churches, friends, other family members who do understand, (your dog-their the best to cry with) or find a hobby and
indulge. I love to garden, take walks in the woods and talk to God, paint,
write in my journal, have luch with friends, go to a show and laugh and cry
all during the same movie. Enough said, I’m starting to ramble.
Please don’t ever give up, our lives are so worth living the best we can.
Ms. Judy:) [CENTER][/CENTER]
AnonymousJanuary 12, 2010 at 1:59 pm
Every time I begion to feel sorry for myself, I come here and find inspiration in your posts, friends. Thank you.
My husband has been wonderful through all of this. Following my first episode of what we now know to be CIDP, we went through 18 months in which I gradually became more and more disabled but was in denial. I didn’t want to scare my young children so I hid as much as I could from them about my loss of nerve and motor function. It was my husband who insisted I keep looking for doctors until I got a diagnosis. And when we finally did get one, he even took a different (less desirable) job to reduce the extent of his business travel so that he could help me and take over more of the household chores. He has been patient and understanding and often sends me to get some rest when I am trying to push through the fatigue.
I worry that at some point I may become disabled enough to need nursing care, or that my medical bills will bankrupt us. I have suggested that we quietly get a paper divorce so that my illness does not cause financial hardship for our family. He just smiles and says “in sickness and in health, remember.” I love him for that, but I really do worry about it. I worry that I will become a burden to him or that he will begin to resent me.
That’s one of the reasons why I’ve started seeing a counselor. And it is helping. We are both more open and have become even closer lately. Eighteen years of marriage and going strong, in spite of CIDP.
AnonymousJanuary 13, 2010 at 2:33 pm
I was 25 when I was diagnosed C.I.D.P and my boyfriend was 21. We had only been serious about three months before I got sick. That was 12 years ago and we are still together. It has been a long hard road. I am unable to work, and can no longer do a lot of the things we enjoyed doing before. Somehow we make it work though.;)
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